Sarcoma survivor and Rein in Sarcoma volunteer, Miranda Mead, has served for the past three years as a Peer Reviewer for the United States Department of Cancer Peer Review Panel. Miranda works with leading researchers, scientists, and oncologists from around the country to determine which cancer research proposals they fund.
This year, Miranda was asked by Dr. Donna Kimbark, Program Manager for the CDMRP, to serve as the speaker for at the Congressionally Directed Medical Research Programs (CDMRP) meeting on Friday, August 27. Dr. Kimbark has managed research funding programs for autism, multiple sclerosis, cancer, and bone marrow failure syndromes. Miranda opened with a Moment of Silence presentation to remind everyone of the importance of the work and the many lives affected.
The CDMRP, created in 1992 via a Congressional appropriation, fosters novel approaches to biomedical research to support the needs of the American public, the military, and Congress.
The CDMRP funds high impact, high risk and high gain projects that other agencies may not fund. All of the programs managed by the CDMRP share the common goal of advancing research, solutions that will lead to cures or improvements in patient care, or breakthrough technologies and resources. The CDMRP strives to transform healthcare through innovative and impactful research.
Thank you, Miranda, for being a part of this team and raising awareness about sarcoma cancers.
Rein in Sarcoma has been asked by KJT Group to promote a study they are conducting for people living with PEComa. They are looking for PEComa patients who may be willing to share their experiences. KJT Group will be conducting 60 minute virtual discussions with qualified patients. By sharing feedback with their research team, you can help improve treatment experiences and outcomes of others like you.
If you have been diagnosed with PEComa and would be willing to discuss your experiences with KJT, complete the survey. You will be asked a few questions about your background and experience. If you qualify for the study, there will be the opportunity to immediately schedule an interview.
Blake Hastings, RIS Board Director, Melissa Davies, Development Director, Dr. Brenda Wigel (UMN), Eric Lien, RIS Board Vice President, Janelle Calhoun, RIS Executive Director, and Tom Boardman, Development Committee Chair.
Rein in Sarcoma’s Board approved a research grant to the 2021 University of Minnesota at its January meeting. The number of grants were reduced based on buget decisions made in the spring of 2020. The University solicited requests for funding proposal from their researchers, blindly ranked them according to national standards, and recommended the proposal by Dr. Jaime Modiano, School of Veterinary Medicine to the RIS Research Committee.
We are pleased to fund this research, and look forward to a presentation on findings at the Sarcoma Research Symposium in 2023. Dr. Modiano has received Rein in Sarcoma research funding in prior grants. He shares with us:
“The data from our previous Rein in Sarcoma grants has helped us secure almost $6M in external grants for sarcoma research from the federal government (NIH and DOD), the state of Minnesota, and animal health foundations. These grants have been instrumental in helping us to complete work that is reported in numerous peer reviewed scientific articles as well as in lay articles. We are extremely proud of our return on investment from this meritorious program.”
Identifying and Characterizing the Cells that Create the Primary and Metastatic Sarcoma Niche | $50,000
Jaime Modiano, VMD, PhD
Jaime Modiano, VMD, PhD – Principle Investigator, Professor of Veterinary Medicine & Research
Aaron Sarver, PhD – Co-Investigator, UMN Medical School Assistant Professor Institute for Health Informatics
Sarcomas, or tumors of connective tissues, are challenging to treat because they tend to invade deep into tissues. This behavior makes it virtually impossible to remove all of the cancer even with very aggressive treatments. But some sarcomas pose even greater challenges because they spread to organs far from the primary tumor. In these tumors, the distant spreading, called metastasis, is the eventual cause of death for patients.
Aaron Sarver, PhD
Primary tumors of bone (osteosarcomas) and of blood vessels (angiosarcomas) are two highly metastatic sarcomas. The assumption with these cancers is that malignant cells have already spread by the time they are diagnosed. Because of this, patients receive extremely intensive therapies that can have severe side effects. Even so, more than half of patients with bone cancer and with blood vessel cancers die from their disease within about 10 and 3 years, respectively. For bone cancer, a 10-year survival might seem acceptable, were it not for the fact that this cancer mostly affects children, adolescents and young adults. It is well accepted that osteosarcomas and angiosarcomas spread through the blood circulation. This has led many investigators to search for tumor cells in the blood. We pioneered this approach for angiosarcoma almost two decades ago. But recent technological improvements provide opportunities to understand how and why the tumor are able to travel to distant sites. In addition, we are now able to find the chaperones that help them colonize new organs and create homes where they can thrive.
Osteosarcomas and angiosarcomas are quite rare in people. On the other hand, both are very common in dogs. We have shown that studying these diseases in dogs can help us better understand, diagnose, and potentially manage them in people. Here, we will use the same approach, studying tumor cells in the circulation of dogs with osteosarcoma and angiosarcoma. We will apply a technology called single cell sequencing. We have already developed methods to find and recover these cells from simple blood samples. Our goal is to determine how tumor cells and their chaperones alter their behavior to support the process of metastasis. The information we obtain from this project will support grant applications to the NIH, DOD, and other agencies. This line of work will help us to identify the cells that are responsible for sarcoma metastasis. In turn, the results will guide development of tests for early detection and to monitor disease progression. And finally, our efforts will provide insights to design new, safe and effective therapies to manage or prevent metastasis.
Charlie Gerk with wife and RIS volunteer, Danielle Gerk
Sarcoma survivor and RIS volunteer Charlie Gerk recently participated in the evaluation of research applications submitted to the Peer Reviewed Cancer Research Program (PRCRP) of the Congressionally Directed Medical Research Programs (CDMRP).
Charlie was nominated for participation in the program by Rein in Sarcoma. As a consumer reviewer, he was a full voting member, (along with prominent scientists) at meetings to help determine how the $110 million appropriated by Congress for Fiscal Year 2020 will be spent on cancer research.
About the PRCRP program
Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Charlie said that, “he was heartened to know so many dedicated people are working hard on cures for sarcoma”.
Consumer advocates and scientists have worked together in this unique partnership to evaluate the merit of research applications since FY09. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs. Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted. We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said.
Scientists applying propose to support and promote high-impact research for cancer prevention, detection, treatment, quality of life and survivorship, and decreasing the burden of cancer on Service members, their families and the American public. The PRCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking research while encouraging out-of-the-box thinking.
If you are interested in learning more about participating in the CDMRP’s Scientific Peer Review Panels, please contact Janelle Calhoun, Rein in Sarcoma’s Executive Director at (763) 205-1467 or execdirector@reininsarcoma.org.
University of Minnesota Professor and Radiation Oncologist Katie Dusenbery has been involved with Rein in Sarcoma from the start. After all, she tells us, “Karen was my patient.” She appreciates the support RIS provides for her other patients and looks for ways the physicians can say thank you in return. A founding board member, Dr. Dusenbery has focused on the education aspect of RIS’ mission.
She loves introducing medical students to oncology. Each time she does, there is “one more person who knows how wonderful cancer patients are.”
After completing a residency at Michigan State University, Dr. Dusenbery came to Minnesota for a Fellowship in Medical Oncology. She switched to radiation oncology for a time, not intending this to be permanent. She discovered a whole different aspect of taking care of patients that she really liked, and decided to stay. In 1990, she took her first staff position at the University of Minnesota. She has served as Head of the Department of Therapeutic Radiology since 1999 and now is recognized as one of the Best Doctors in America in her field. As she talks, one understands that Dr. Dusenbery has a passion for the clinic; she really cares for her patients, and she wishes to train new doctors who will do so, as well.
The rigorous, multi-disciplinary work in an academic medical center always called to Dr. Dusenbery. She can’t imagine practicing any other way. As you may know, there is a good deal of “gray” when it comes to treating sarcoma cancers. It is easier to make decisions in collaboration – and also fun.
When she began to treat patients with sarcoma cancer, there were no other radiation oncologists specializing in the area. Dr. Dusenbery gravitated to these patients, who often were young, and saw this as a great opportunity for her future work. Although she now shares sarcoma patients with Dr. Chinsoo Cho, who she recruited to her program several years ago, Dr. Dusenbery still treats patients. Especially the kids. With pediatric patients, the first challenge is to see if you can avoid having to give radiation at all. Because their bodies are still growing, their cells can be more vulnerable to radiation damage. They also have much longer lives ahead of them, making the risk of secondary cancers that can develop as a side effect less tolerable. If radiation really is required, “you try to limit the dose as much as you can.”
Just what does a radiation oncologist do? Long-term follow-up with patients, for one thing. “I love that.” But first, they design the radiation field by drawing on a scanned image, slice by slice, to show what areas should be treated and which should be avoided. Dosimetrists and medical physicists help to translate these instructions before the machine is powered on and the precisely targeted beams are delivered. Sounds like Star Wars to me. And there is a lot of art involved. Decisions must be made based on imperfect data. Doctors must balance the goal of controlling the cancer against the desire not to cause harm. One of the most difficult aspects of Dr. Dusenbery’s medical practice is when a patient’s cancer comes back, or a patient experiences a bad side effect, and “you second guess what you should have done.”
Teaching others how to navigate these challenges is another great part of Dr. Dusenbery’s job. She loves seeing a resident start out not knowing what they’re doing, then learn, then go out and do well in practice. “When they become a really good doctor.” Teaching doctors how to treat patients well “can make a difference for a lifetime.”
The oncology patients, in particular, have spoken to Dr. Dusenbery. Cancer is “an advanced course in living” and it is really an honor and a privilege to be on the journey with them. One family she joined for the journey was Karen Wyckoff’s. Karen was “such an incredibly wise beyond her years young woman” and it was really fun knowing her. Dr. Dusenbery was a founding Rein in Sarcoma board member. One has the sense that she will stay connected for as long as she is welcomed. And she seeks good ideas, including ideas about how the physicians can thank the group for all the patient support services it provides.
This wish led her to begin the Mini Medical School, which was presented by UMN doctors for several years. Offering families, volunteers and donors the chance to learn about sarcoma, up close and hands-on, the Saturday morning affair was been a big hit with those who’ve attended.
Dr. Dusenbery began the Rein in Sarcoma Scholar program in 2009 (now the Jan Maudlin Sarcoma Scholars), connecting medical residents with the University’s sarcoma team. The scholars coordinate an educational presentation about sarcoma to other medical students, increasing the chance that if they encounter a sarcoma cancer in clinical practice, they will actually notice the signs and respond appropriately. The Jan Maudlin Sarcoma Scholar program offers another benefit: there is “one more person who might become an oncologist.”
We thank Dr. Dusenbery for her long and inspired service to RIS.
Emily Greengard is a Pediatric Medical Oncologist at the Masonic Cancer Center and Assistant Professor at the University of Minnesota. Dr. Greengard has become involved with the RIS Medical Advisory Committee so central to the work of the Red Flags team. Passionate about treating her patients and having the opportunity to combine her practice with research in an academic environment, Dr. Greengard says “it’s nice to wake up every morning and think there’s nothing else you’d rather do.”
A two-part focus
Emily always knew she wanted to be “a doctor treating children,” but did not begin with the idea that her work would be with cancer patients. During her Pediatric Residency at Children’s Memorial Hospital and Northwestern University, she rotated through the children’s oncology practice. There, she “just fell in love with the patients.” She really appreciated the interpersonal relationships that can be developed with patients and their families. Dr. Greengard knew she wanted to practice in an academic environment, because she wanted some component of her career to be research. She is intrigued by the cancer disease process, with so many incredible research opportunities to advance the field and improve treatments.
Minnesota, and sarcoma
As she completed her Hematology/Oncology Fellowship at the Children’s Hospital of Philadelphia, Dr. Greengard became more and more fascinated by solid tumors, and then by sarcomas. As many of us know all too well, so much more progress is needed to improve outcomes and decrease the toxicity of treatments for this cancer. Dr. Greengard would like to contribute to this advancement. A lifetime resident of the Midwest except for her time in Philadelphia, Emily was happy to come to Minnesota. When she learned of the job opening, she felt it would be “perfect” for her and “a really great fit.” Offering an academic environment and the opportunity to practice with “grounded, supportive people” who have been successful in building their own practices, she expected it to be a great environment to start her career.
Working with the Red Flags
In 2012, Dr. Greengard joined with Rein in Sarcoma after spending time at the Sarcoma Corner during the annual Party in the Park event. Since that time, she has been active with the Medical Advisory Committee, a group of physicians from the University of Minnesota and Children’s Hospitals and Clinics of Minnesota. Together these doctors meet with members of the RIS team to develop materials and design programs to educate both lay people and professionals. Missed diagnosis and delayed or inadequate treatments are still all too common with sarcoma. The Red Flags team is working to improve these odds. When asked what is surprising about her work, Emily said: “How incredibly resilient people are.” No matter what their background, people rise to the occasion and find a way to get through the situation. She said she’s “always so amazed” at how families do.
And we thank Dr. Greengard for her energy, enthusiasm and fine contributions. We hope her practice will go well here, so she may stay in Minnesota for a long time.
